Having survived stage 3 anaplastic large cell lymphoma, a rare form of non-Hodgkins lymphoma, at times it’s as if it never really happened to me even as it remains an integral part of who I am.
In the darkest days of that illness, while I did indeed worry if I would get through it, there was still a part of me that believed that this was just going to be one more twist in the legend of my own life and in the long run, it would be insignificant in the face of everything else still to come.
I don’t dwell much on that time, but every now and then, something brings it all back. The other night was one of those times. I watched the movie “50/50” with one of my sons and my daughter. I had wanted very much to see this movie, and had been looking forward to it for some time. If you’re not familiar with the plot, the main character, played so well by Joseph Gordon-Levitt, is a 27-year old man who finds he has advanced stage cancer and has a 50/50 chance of getting through it. Thank goodness, he did.
It was a movie. Just a movie, but not long into it, I wanted to shut it off, and retreat into my room. I had to will myself to watch it, and once I did, I got through it just fine and liked it very much. Seeing anyone being diagnosed with cancer, regardless of the kind, just spirals me right back to hearing it myself. Remembering what that felt like. Remembering what it was like to suddenly have an oncologist. An oncologist, I mean really. . .that’s some pretty serious shit.
Making that walk down the hall for chemo for the first time — the character in the movie went by himself. His girlfriend couldn’t handle it. It was surreal for him. It was surreal for me. Why didn’t I even think to ask anyone to come with me? Other people did. I just asked for my son and husband to pick me up after since I drove myself there from work. I needed a ride home because they were giving me Ativan and I wasn’t allowed to drive home on my own.
I remember being told what my chemo regiment would be, something called CHOP. It sounded horrendous. I didn’t even like the name. I was told my cancer was aggressive but that the treatment was equally so. I don’t get scared about a lot of things, but man, the sound of that chemo scared the crap out of me, even more so than the bone marrow biopsy and that was pretty bad.
Someone told me that I should reconsider undergoing chemo. Didn’t I realize that they’d be putting chemicals, poison really, into my body? Didn’t he realize that I already had something pretty bad in my body and those chemicals were my only shot at getting rid of it?
I remember hurting, just hurting. People said prior to my diagnosis that I probably didn’t have cancer because cancer doesn’t hurt. Those people didn’t know what they were talking about. I had a CT scan in the staging process and thought CT scans really hurt. I didn’t realize it was me that hurt and that the test was really just a piece of cake. I thought Gallium scans were painful, too, but again it was just me that hurt lying still for any length of time. It wasn’t until the chemo started doing its work and the cancer began its retreat that I began to understand how painless those scans really were, although the bowel preps I could certainly have done without.
When the character in the movie shaved his head, proactive in what was soon to come; I remembered shaving my own head, seeing the chunks of hair falling in the sink, looking up in the mirror at my strange bald head but still feeling a bit of relief. As the chemicals set in, my hair had started falling out and my usually fine soft hair changed texture. Every time I touched it, I felt like I was patting a German shepherd. When I couldn’t stand it any longer; the hair falling out in clumps, intermittent bald spots and coarse, lifeless hair, the clippers came out and the hair went off. I wondered if it would ever grow back again and if it did, what would it be like?
I started wearing hats, scarves, head wraps and sometimes, nothing at all on my head. I learned that cold rain really is cold and that having no hair didn’t keep me any cooler in the heat. Sometimes I forgot I had no hair and walked out to get the mail, startling neighbor children who had no idea I was sick. Once, after my treatment was over, still hairless, I went out to breakfast at a small restaurant near Newfound Lake. I had on funky earrings and was feeling good about things. A small child screamed when she saw me and told her mother I scared her. I wasn’t feeling so good after that.
Early on, my white blood cells quickly dissipated to levels where they shouldn’t be. When my oldest son came to pick me up from my 2nd session of chemo, we both learned how to administer injections into my thigh of something to boost my white blood cells. I wanted him to learn in case I couldn’t do it myself. I don’t remember if he ever had to; I just remember hating those fine-needled injections, over the course of several days after each round of chemo. I was told that I would literally feel the effects of this medication directly in my ribs and I did. I never knew it could hurt right inside bones like that and I still remember exactly what it felt like – as if someone was ripping my bones apart from the inside out. Sometimes that medication made my legs go weak, which was exactly the case when I fell down the cement front steps at our annual library book sale one day just before my son’s birthday at an indoor amusement center. I scraped both my knees and called my mother crying like I was five years old and had hurt myself at the playground.
Later my red blood cells steadily decreased and there was some very expensive, very helpful injection that made a huge difference and kept me going. I still bear a scar on the back of one of my arms, but it reminds me when I see it of all the amazing drugs that were available to help get me better. The scar from my port has finally faded, but I remember how foreign that thing felt under my skin and how delighted I was to get it out. My veins are so tiny that it was necessary and I know it served me well. Unfortunately the line that went through my vein also contributed to the blood clot that would come in time. It’s 11 ½ years since it was removed from my arm but yet the veins on that side of my upper torso remain prominent under the skin.
My arms and legs became swollen and numb at times, and I would leave work for one more ultrasound to determine there wasn’t a blood clot. The warm gel prior to the ultrasound always felt relaxing and it was generally a relief that no clot could be found, until of course, one day, there was. I took Coumadin and administered injections into my abdomen; my only concern was that this would delay the removal of the handy-dandy port in my arm that had been used for chemotherapy each time.
I remember sitting against a tree at Pawtuckaway State Park, the day before 4th of July, feeling lethargic, having to stay out of the sun due to skin sensitivity from treatment, worn down by months of chemo. I thought I was just tired from the heat. I wasn’t. I had a staph infection in my blood. The thing with cancer is that when you’re sick, you get instantaneous attention and a private room at the ER. When you’re admitted, as I was, there’s no lines, no waiting, to get you into a room. They don’t want you catching anything else.
After several days in the hospital, they allowed me to leave and have my very last chemo session. I went on vacation the next day, an IV in my arm to administer powerful antibiotics until midweek when my son would help me remove it. I felt like some frail wounded bird. The final insult – my eyelashes and eyebrows had started falling out. Not the end of the world after everything else that had happened but for me, it was the final straw. Bald head, balding eyes, no energy, no ambition, an IV in my bruised arm; I walked along the water edge, staying out of the strongest sun of the day, hardly any breath available to walk up the hill to the inn, not even caring at this point if I was going to die. I sat on the deck at night thinking if I did, it might as well be here, the place I loved most. The irony was that I was now solidly in remission and I felt worse than I ever had.
The oncology nurses were beyond amazing, dealing with tough situations daily, yet compassionate and encouraging while they served as a lifeline for us all. I knew no matter what was going down, one phone call ensured I would be taken care of and fast, regardless of what was happening. Numb fingertips, mouth sores, a head cold, massive diarrhea, those nurses had answers and I don’t think I’ve ever had such good care prior or since. And they remembered you, even six years and hundreds of patients later, remembered patients by name and always with a hug for you. Those doctors were beyond amazing with their knowledge and their kindness, offering reassurance and such good care. I remember my oncologist telling me once that I was mighty. I didn’t know if I was but I chose to believe him.
But what I remember most of all is how sick so many other people were when I was. I remember older couples together at chemo, a wife knitting a sweater while her husband sat in a recliner, chemicals feeding into his body. She worried and discussed medication protocol and schedules with nurses, and I saw how this illness had consumed them both. I was grateful to have a young family and work to contend with, things to occupy me beyond the situation at hand. I saw young people and old, families holding each other up; some looking destroyed and others hopeful.
I remember learning of people in my own community that were sick, some moms just like me. There was a mother coming from the hospital directly to my oldest son’s Eagle Scout ceremony. She wanted her young sons to see what they could aspire to in scouting. We chatted briefly, each in our head scarves, bald heads peeking out below. My hair would grow back that fall. I don’t believe hers ever did before she died. I didn’t know why I got to live when she didn’t. It’s not that I wasn’t thrilled to be here still. I just didn’t understand why she didn’t get to be.
And I remember all of the goodness that surrounded me. How much my own family did for me, and how my former husband, who was struggling with his own serious illness, Parkinson’s disease, did the best he possibly could to take care of everything. My parents were dealing with both of their children diagnosed with cancer; my brother also was undergoing treatment at the same time for thyroid cancer for the second time. They never showed how devastated they were to either of us, and remained supportive and strong for us throughout. Little did we know that my father would be gone in less than a year, after bravely battling a brain tumor and lung cancer, a diagnosis we wouldn’t learn until the coming fall. The day my father died, a wonderful, wonderful woman appeared at my mother’s house, bearing delicious homemade cookies and soup. She didn’t know he had passed that morning, and oddly enough, this amazing woman who was also fighting cancer, would also be gone almost a year to the day from that morning.
My friends, along with so many people in the community, were there for me and for my family and in so many ways. My co-workers and the people I worked for were tremendous in all that they did. They made me laugh, made sure I ate and had the best insurance they could provide. They had unbelievable patience with me, regardless of how inept I must have been at times, and allowed me to nap whenever I needed to. I insisted on coming to work every day, but there many days I couldn’t even remember what I had done the day before. A lot of that period in time is still a bit disjointed for me, but I very much remember the outpouring of kindness that came my way. As sick as I was, I remember literally feeling the blessings, the prayers, and the good energy that people were sending to us.
I was 39 when I was diagnosed with cancer in February 2000, just a week after my oldest son turned 18. My youngest was 7. My oldest is about to turn 30 in just two weeks and my youngest is in his first year of college. Back then, I didn’t know if I’d get to be here for all of this, but I just prayed I would be able to at least see their childhood through. It took at least a year after my treatment ended, to begin to feel good again, to regain energy and get my bearings once again. At work, we’d joke about chemo brain; how fuzzy my thinking seemed to be. There have been so many losses since that time and I’d be lying if I didn’t admit to having a hard time with it. I still get to be here and so many do not.
A couple of years after my own experience with cancer, again one of my children’s classmates lost their mother to cancer. My daughter and middle son chose to attend the wake, and since it was one of their first experiences, other than their grandfather’s funeral (there had been no wake), I decided to go with them. I did not know this woman, nor did I know her children. I took one look at the photos of her with her family and was overcome with such profound sorrow that I had to leave the funeral home in hysterical tears. The loss that family and so many others that I knew had endured were more than I could handle. Again, I was overwhelmed by the realization that I was here and they were not.
When I got sick, I never asked that question, “Why me?” I remember thinking, “Well, why not me?” Strangely enough, it took me getting better to start to question why. I still haven’t figured out why this privilege fell to me, but I know that I have to live my life with appreciation and care, and do the best that I can in how I live it.
Pamme Boutselis 